Participate in a Research Study

The Congenital Muscle Disease International Registry (CMDIR) is recruiting patients to participate in clinical trials for Congenital muscular dystrophy.

The first step for those interested in participating in these studies is to register with the CMDIR.

For more information, please contact Rachel Alvarez, Associate Director, Congenital Muscle Disease International Registry (CMDIR). Phone: (323) 250-2399

 


 

Investigators at the University of British Columbia and Sunny Hill Health Centre for Children are conducting a study investigating the feasibility of conducting research measuring the impact of providing a new power wheelchair, on wheelchair driving performance and participation in everyday activities for children and youth with significant mobility limitations. The study is recruiting children (5-17 years) and families in Vancouver/ Lower Mainland, BC, and will involve:

  • Questionnaires & driving assessments
  • Repeated sessions with less than 2 hour/session
  • An honorarium will be provided for your time

Find out more.

 


 

Participate in a study examining measures of scooter use. Researchers from the University of British Columbia are looking for volunteers who:

  • are 19 years of age or older;
  • have owned a scooter for at least 3 months;
  • have mobility limitations that prevent you from going more than one block without and assistive device;
  • can read, write and speak in English.

Find out more.

 


 

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Muscular Dystrophy Canada is playing a key role in an exciting new patient research initiative called The Christopher Project. We’re working in collaboration with the Marigold Foundation and clinical centers of excellence across North America to survey patients and families about their experiences in living with neuromuscular disease, specifically myotonic dystrophy types DM1 and DM2. The information gathered will be used to increase our shared understanding and address the challenges of living well with this complex disease.

If you or someone you love is affected by myotonic dystrophy, and you would like to participate in this important initiative, please submit your mailing address.

For more information or to fill out the survey online, please visit the Christopher Project website.

Questions? Please contact Marla Spiegel at 1-866-687-2538 ext 1103.

 


 

Preferences and the Value of Whole-Exome Sequencing as a Diagnostic Tool for Rare Diseases

The aim of our study is to explore and understand the perceptions and opinions of patients with rare diseases regarding the value of obtaining a diagnosis. Furthermore, we would like to understand the value of using technologies such as whole-exome sequencing (WES) in providing a clinical diagnosis for patients with rare diseases. It is part of the CARE for RARE project, a pan-Canadian project promoting the use of a new genetic technology for diagnosing rare diseases.

We are looking for input from patients and parents of patients with rare disease in Ottawa, Calgary and Edmonton.For more information email Kathleen Charlebois.

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